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Adam Lanza and Asperger's syndrome reports: Parents of children with syndrome worry about stigma

By Kurtis LeeThe Denver Post

Posted:
12/20/2012 09:50:15 AM MST

Updated:
12/20/2012 04:59:00 PM MST

WATERFORD, Conn. - For Julie Shafer and her 10-year-old son, Caleb, a meticulous routine helps them maneuver through each day.

Wake up at 6 a.m. Leave for school exactly 95 minutes later.

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Spaghetti for dinner on Mondays. Hot dogs on Tuesdays.

The consistency comforts Caleb, who was diagnosed with Asperger's syndrome in March.

"The need for structure is huge in our lives," Shafer, a single mother, said Wednesday. "He moves by his own clock and it helps him stay focused and at ease."

In the days since the Dec. 14 deadly mass shooting at Sandy Hook Elementary School, Asperger's has been thrust to the forefront because of reports about the 20-year-old gunman's diagnosis with the autism spectrum disorder. Medical records have not confirmed it, though the discourse about the possibility the gunman had it has parents like Shafer concerned about the stigma the tragedy may bring to those who have Asperger's.

"To hear the killer could have had it, it just amplified everything," said Shafer. "It's ignorant to think that Asperger's in any way contributed to him doing such a horrendous thing."

Considered a high-functioning form of autism, Asperger's is a developmental disability that is characterized by difficulties with social interaction and communication with others. The neurological disorder is usually not diagnosed until a child enters school and begins interacting with others. Moreover, the cause of Asperger's syndrome remains a mystery, according to the National Institute of Neurological Disorders and Stroke.

For Caleb, a fifth-grader who enjoys Legos and model airplanes, news that the gunman might have had Asperger's surprised him.

"I was just hoping I would be treated normally like nothing had happened ... I wasn't a part of it at all just because he (the shooter) had the same diagnosis as I have," said Caleb.

Shafer says her son often has trouble holding extended conversations and making eye contact with others. If something happens he doesn't like -- such as not having spaghetti for dinner on a Monday -- an outburst of emotion will usually occur.

Dania Jekel, executive director of the Asperger's Association of New England, said people with the condition can sometimes visibly appear to be socially and emotionally younger than their chronological age. Jekel notes that despite some of the difficulties children with Asperger's might face -- such as being bullied -- the condition does not evoke violence and that oftentimes those with Asperger's are instead victims of violence.

"It's a neurological disorder and not a psychological disorder," Jekel said. "This is not a condition that affects mental health, though there are people with Asperger's who do have mental health issues." In fact, in the Diagnostic and Statistical Manual (DSM-V), expected to be published next year, Asperger's syndrome will not be listed as a disorder. It will be considered part of the autism spectrum.

Many experts said the type of violent behavior seen in the gunman, who killed his mother, then 20 students and six teachers at Sandy Hook Elementary School, is uncommon with Asperger's syndrome.

"It's unheard of," said Mary R. Cohen, director of the Center for Teaching and Research in Autism at Pace University. "People with this developmental disorder have shifty moods. When they're happy they're extremely happy. But when they're upset, it's instantaneous, but never prolonged in fashion where they're plotting to do harm to others."

Still, in Casper, Wyo., a 25-year-old man recently cited his Asperger's syndrome as the reason he killed his father and then took his own life on the campus of a community college.

"You should not have allowed my father to breed because he was genetically predispositioned toward having Asperger's syndrome and put me at greatly increased risk for having it," wrote Christopher Krumm in a suicide note.

According to the NINDS, a specific gene for the developmental disorder has not been identified. Moreover, recent research indicates that there's most likely a common group of genes whose variations or deletions make an individual vulnerable to developing the condition.

Pete Bardunias, whose 13-year-old son, Jonathan, has Asperger's, said Wednesday he's concerned about the attitudes being displayed toward people with the condition.

"It hurts to see the media latch on to the syndrome like it was a driving force," said Bardunias from his home in Clifton Park, N.Y. "[If ] you ask me he (the gunman) had some serious mental health issues."

Max Wiznitzer, a pediatric neurologist at UH Case Medical Center in Cleveland, Ohio, said that it's possible the gunman did have Asperger's, but it's likely he had mental health issues as well.

"It's tough to look at this case and not think that something very serious - not Asperger's - led him to such violence," Wiznitzer said, adding that it could a mix of several mental health problems.

Meanwhile, Jekel, whose organization offers counseling and support to individuals with Asperger's and their families, insists the condition does not make individuals recluse. Several classmates of the gunman have said he was a loner, who often shied away from conversation and interaction with others.

"They're doctors, lawyers, actors it's not like Asperger's makes people depressed or isolated," Jekel said. "The way they describe the shooter is that he didn't want to spend time with others, that's not necessarily a trait of the condition."

Shafer said she understands that people want answers and want to understand why someone would walk into a school and kill innocent children and their teachers.

"I just don't want people grasping at straws and labeling people with this condition," Shafer said. "Because there can be a serious ripple effect on this community."

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